Hello
This is my first time on this website.(newbee)
I need to vent to someone who understands.
I am a single parent of two kids (13)(1). I work a full time job, go to school full time at night, and now have lupus.
Do I need any more stress? Why yes, my 13 year old has ADD and my 1 year old just had a seizure last week and cannot get rid of her pneumonia. I cannot eat anything without it running right through me within 20 minutes. Lost 20 lbs. so far from it. Not really the right way to lose.
Just went to the GI doctor. He ordered more blood test, urine test, and an abdominal CT. Don't know the results yet.
Also went to the Rhum. Doctor. He says that I have to wait for the plaquinil to get to work before things get better. Just started it in June. Since before diagnosis and after I have had severe ulcers in my mouth to the point that I cannot talk, swallow, sleep, or eat. I get these every month. Will be due again soon. Have to take off work for 2-3 days every time.
Seems like I have the body of an 80 year old and I'm only 33. I get tired all of the sudden. Wipe out is so predictible. Cannot walk without my knees, back, or hips hurting. Cannot enjoy playing ball with my son. Can only last a few minutes.
Outside? Well, that's a thing of the past. Get severely sick when I am in the sun long. Nausea, headache, lightheaded, and weak. Use to love the outdoors. Cannot enjoy that either.
Worry that I cannot perform as a parent for my kids. Being sick or in pain all the time. When does the medication start working?
About time for me to get iritis too. Just one thing after another. Almost feels like I am one of those people that always has a health complaint. Yes, maybe I am. Sortta, I guess. Can't help the way I feel.
I DON'T WANT LUPUS ANYWAY! Really messes up your life. How did I get it anyway?
Well, enough of my pathetic whinning- or so my family says. How about they get it for just one week and they will surely understand.
Just glad I had the time to type out my frustration and vent to whoever decides to sit down to read.
Can't even find a support group nearby. For at least 200 miles or more.
All that I have is the computer and my doctors.
Any comments? Help?

KathyW1958

08-19-2008, 05:11 AM

Hi and welcome to the forum. I can definitely understand how you feel. The Plaquenil can take up to about 5 months to get fully kicked in. I am wondering why the doctor did not put you on Prednisone to taper down for when the Plaquenil gets fully kicked in.

There is nothing that you did to get Lupus. Unfortunately from what my doctor a good Rheumatologist told me is that the CDC has ruled that they believe that Lupus is inherrited. I definitely believe that it is as 3 out of 5 of us girls in my family unfortunately have it. There are 8 children in my family. I had an Aunt with it too.

Lupus is a very hard illness to live with and a lot of people don't understand how bad it is. Unfortunately we can look perfectly healthy and yet that is not the case. I would like to see a more awareness brought out to the public about this illness.

It is okay to vent as we all that come here definitely understand where you are coming from. There will be others that come in here with really great information. Please keep posting ok.

Hugs,
Kathy

Pearl

08-19-2008, 06:39 AM

Hello and welcome -

So sorry you are struggling right now. As Kathy said, the Plaquenil can take several months to kick in. I am no physician, but it is my understanding that one of the side effects of Plaquenil can be digestive problems such as you describe. Try to eat some plain crackers and drink a little ginger ale. Club soda with lime is another alternative. I have found that the ginger ale and club soda with crackers will sometimes settle my stomach when nothing else stays with me. I too lost about 20 pounds when "IT" decided to move in. I refuse to let IT take any more. I eat what I can, when I can, and I try not to worry about it, as that only makes things worse. I have been on Plaquenil for a little over a year. My experience has been that it does get better, over time. Getting that internal inflammation to calm down is the key. Stay with it, and keep your doctor informed. Stay hydrated. That is really important when you suffer from the digestive issues you describe.

I know it can all be overwhelming, especially with young children in the house. Stress can make the flares worse (am I stating the obvious??) Make sure you take care of yourself and give yourself permission to rest.

I wish you health and peace.

Jana

Saysusie

08-20-2008, 02:23 PM

Welcome Isavelives;
You have already been given good information about Plaquenil (especially the fact that it takes a while before you see the benefits). Once you do begin to see the benefits of Plaquenil, the drug works very well. It should take care of the ulcers in your mouth also. Often, doctors will prescribe Prednisone with the Plaquenil so that you can start feeling better sooner. Prednisone is a corticosteroid and it is very similar to the hormone cortisone, which the body manufactures naturally.

In part, prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and causes undesirable effects. These illnesses are referred to as "autoimmune diseases". Prednisone suppresses the production of these antibodies. This suppression stabilizes the overactive immune system of Lupus.

As Kathy mentioned, you did nothing to "get" lupus. There is much discussion amongst doctors and researchers that link Lupus to genetics and so, it is thought that many of us are pre-disposed to get an auto-immune disease. Lupus is not a disease that one "catches" or "gets". Somehow, the gene is already within us and some factors (such as stress, viral illnesses, or trauma) activates it, so to speak. Most of us have been able to look back and determine that we were in a very stressful period in our lives when our lupus reared its ugly head. Others recall having a very serious surgery, while others recall a very traumatic event. So, Lupus was always there, it was just dormant or very, very mild until something caused it to activate.

Now that we have been diagnosed with the disease, it is our goal to take very good care of ourselves, to take our medications as ordered, to avoid stress, eat healthy, get rest, and avoid the sun! Also, come to us whenever you have a question, need advice or information, or just want to vent. We are here to help you in any way that we can and there will always be someone here when you need us!

Peace and Blessings
Saysusie

rob

08-20-2008, 04:32 PM

Hi isavelives,

There are so many common things in your story and mine. The terrible mouth ulcers, extreme sun sensitivity, fatigue that feels like you are covered in a lead blanket, the joint pain. I'm 40 and many days I feel like I'm 80 too.

I also have been one of those people who always seemed to have health problems. Been called a lazy pathetic whiner, slacker, faker, and worse. Well, the reason I always seemed to have health problems was because I really do have health problems! Lupus is real. The pain you and I both feel, is real. You are not pathetic, nor are you a whiner. You have a very real, and serious disease.

But, it is a disease that can be managed, and you'll see there are many people here who have lived with lupus for a substantial portion of their lives, and are still going strong. The meds take time to work, and it will take time for you to learn how best to take care of yourself and cope with the pain and problems that lupus can cause.

But things can, and will get better. I was diagnosed with SLE in 2004. I have my good days, and I have my bad days. I try to enjoy every minute of every good day, and keep the feelings of those good days fresh in my mind to help me through the bad ones.

You can come here anytime you need, and vent all you want. I've found nothing but understanding, support, and friendship here. Believe me when I say that we understand how you feel. Hang in there, and don't be afraid to come here and talk. Welcome to the family.